Personal Story: Seasoned Thoughts
This installment of "Personal Stories" features posts from people who publish CFS weblogs, better known as blogs. These websites feature written entries, similar to a journal but with the added benefit of readers being able to post replies and initiate dialogue and support with the author and each other.
Here, two longtime CFS bloggers—one from Australia and one from the U.S.—paint a picture of their illness experience in seasonal terms.
The calendar says autumn. The humid 30-something days still say summer. When I step onto the floor, the boards are damp underfoot. The air throbs with heat and moisture, and cicadas blare their approval.
External markers of time are perplexing. They seem out of kilter with my own experience. My body is paused, frozen in a season of its own, yet the earth continues its rhythms. The seasons turn, the moon rises, the sea wishes and washes, nothing is forever. I hold this in my mind and hope this relapse breaks soon.
There have been other relapses, too many to count. But this one is protracted. Several years in, I’m starting to wonder: Is this the new normal?
I was carving out a small, slow life for myself. I thought I was through the worst, that I’d never return to the long years of severity I had at the start. I thought the cycles of life had picked me up and deposited me in a place further along—that I could never go back there. Now I understand that the trip backwards can be fast, and the way out is slippery.
I want to hit the stop button on the outside world so I don't miss anything while I lay here, try to be patient, fail to be patient. I am always ready. Here in my season of waiting, I am ready.
Greenwords is a blogger from Australia who chronicles her experience with CFS and life in general through evocative posts and photos that range from moving to humorous. Her site also includes links to published articles and information on CFS.
Illness Is a Kind of Winter
Illness is a kind of winter. It strips the green, leaving only the bare, peeling branches of your life; but it opens the sky. The view widens. It is a new season, only that. You know it will get colder. You know ice is coming. You retreat indoors, inside.
Reading MFK Fisher, I see that I know nothing, really, of pain; and less of those who live with—who love—the person in pain.
I am in a between place. I feel change coming—which, I suppose, is appropriate to the season. I sit on the deck, alone, late in the night, smoking in the snow.
I shall accept T's offer of a tree, cut from his property in advance of the power company saws. We will put it on the deck and decorate it with icicle lights and the Buddhist prayer flags K. gave me for my birthday. I will welcome this solstice and whatever darkness and light it brings.
I don't know who I am. I am no-one. I am a dark vessel, waiting.
Sharon was diagnosed with fibromyalgia in April 1995, and later with CFS. Her blog,
Abide, includes links to pertinent news items as well as personal sites and blogs that either deal with or are written by people with chronic illnesses. She occasionally posts personal meditations, but more of her mediations and poetry can be found on her other site, Watermark at www.sbpoet.com.
To learn more about the world of CFS blogging, see the article “Welcome to the CFS Blogosphere!” in this issue of the CFIDSLink (originally published in the CFIDS Association’s quarterly magazine, the CFIDS Chronicle).